E-360 Edition 18: Questions and Answers

Q: I was diagnosed with epilepsy a year ago at age 78. My husband has noticed the medication is making me sleepy and inactive most of the time, when I used to be a very active person. The doctor says I am taking an average dose range for this drug. What is the average dose range and could I be taking too much?

Every person is different and the dose of medication they need will depend on many factors. The ‘best dose’ is the one that controls seizures with the least amount of side effects. This differs from person to person.

For example, a recommended adult dose range for an antiepileptic drug may range from 400–2000mg per day. These figures are a very general guide but they are not individualised to each person: some people may have their seizures controlled on a dose lower than the bottom dose or higher than the top dose. In older people, the dose tends to be toward the lower end of the spectrum.

Some things that affect the best medication dose for an individual include:

How the medication works: Some need to be given in higher doses than others. Some work best at low doses.

Other medications being taken: some may affect how a drug is absorbed or metabolised in the body.

Other health problems: can mean that the epilepsy medication may have more side effects or not be absorbed as well.

Sometimes blood levels can be taken, but once again this can be used as a general guide. The most effective way to monitor if a drug is working is seizure control.

An antiepileptic medication is usually started at a low dose which is slowly increased until you reach the lowest amount of drug that will control seizures and not cause side effects. Sometimes experience helps your doctor know how much to give you and when to change the dose. Other times, there’s a bit of a ‘trial and error’ approach to find out what is best for each person.

If you have been experiencing these symptoms since starting anti-epileptic medication, they may be the cause of your sleepiness. It would be worth raising your concerns with your doctor and ask for the medication to be reviewed.

Q: Sometimes when I get up in the night, I’ve turned on the lights and had a seizure. I’m wondering if our lights are the wrong type for someone with epilepsy. What type of light bulbs should I have indoors if I have photosensitive epilepsy?

There really isn’t conclusive evidence about particular types of lighting or light bulbs that are better for people with photosensitive epilepsy. The main perpetrator for many people seems to be faulty or flickering bright lights.

From your description it appears the sudden change from darkness to bright light may be the issue. Some people with photosensitivity have seizures triggered by the change of moving between the muted lighting found inside and the bright sunlight outside. To counter the degree of contrast, you could consider using a lower wattage or soft-focus light bulbs in your home or a dimmer device. A quick and economical solution could be to install a low wattage bedside lamp or use of nightlights that provide a glow rather than stark bright lighting.

The Zeiss Z1 blue lenses have been shown to stop seizures for many people with photosensitive seizures

Q: I have epilepsy and I want to have children in a few years. Can I get genetic testing to see the likelihood of passing it on?

Although epilepsy that runs in families is uncommon, genetics play a part in many types of epilepsy. Genetic forms of epilepsy can present with generalised, focal, or even multiple seizure types. Most genetic forms of epilepsy begin in infancy, childhood, or adolescence. However, a few genes have been identified that can cause seizures starting in adulthood. Genetic testing is appropriate for anyone with a suspected genetic cause of their epilepsy. You will need to discuss this with your doctor.

The chance of finding a genetic cause for epilepsy is higher if you have other family members who have similar symptoms. However, people with no previous family history of epilepsy may also have a disease-causing mutation in an epilepsy gene.

Identifying a genetic cause of your epilepsy can:

confirm your type of epilepsy, especially if the diagnosis is not clear, based on EEG findings or symptoms.

help with decisions about treatment choices for your epilepsy.

provide information about associated neurological or other health problems that you may arise in the future.

help clarify the prognosis and expectations for your epilepsy.

identify your family members who are at risk of developing epilepsy or having a child with epilepsy.

Usually, genetic testing requires a blood or saliva sample to be taken from the person with epilepsy. The sample is then sent to a laboratory for genetic testing. The test looks at the DNA in the person’s blood or saliva. The sample is analysed for mutations or changes in a subset of genes that have a known association with different types of epilepsy.

If a gene is identified in a person with epilepsy, then other family members can be tested, regardless of whether they have epilepsy or not.